Molly Watt Trust

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services.

It certainly got me thinking and discussing in depth my journey of care with my Mum, the more we discussed the more obvious it became that there are really important communication issues amongst the many professionals connected to my care and wellbeing.

It had not dawned on me that since being diagnosed deaf at 18 months old and then deafblind at 12 years old just how many people, professionals, departments, agencies have been involved with me and on so many levels and how clear it is that there is a very serious lack of communication between them all!

Of course everybody has a GP, I then had an audiologist, a speech therapist, a teacher of the deaf, a teaching assistant and a social worker - I believe some of these did communicate with each other.

Then on diagnosis of Usher Syndrome I then had all of the above plus a teacher of the blind /VI, a teacher of the deafblind (eventually) an ophthalmologist, eventually a social worker but not trained to work with the deafblind and an occupational therapist - it is pretty clear these professionals were not working together.

Also involved was Department od Work and Pensions (DWP) and at one point Job Seekers Allowance (JSA) these two clearly did not communicate with the professionals involved in my care.

Strangely all of them would have details of me and my condition, each needs to be fully aware of my wellbeing, my needs and support required and yet everything is so disjointed.

Each writing to each other for information, often having to check or confirm information before there can be any positive action.

Why are my details not simply amalgamated digitally? I am not an expert on Data Protection but I'd be more than happy to give permission for my medical data to be shared amongst the various professionals deemed to be responsible for my care rather than me having to all too often explain my situation to all.

I am fortunate, my communication skills are good and I have a good understanding of my condition, however, some struggle to communicate and get across important information or need to rely on interpreters to communicate their needs.

I understand we cannot expect every professional to know about every specific condition, particularly the ones like my own, not as rare as some suggest but a condition that does vary from person to person.

Digital could make life so much easier in these situations and so much less time consuming.

To give an idea of the difficulties I have encountered as a result of having more than 12 professionals involved in my care please read on:

The longest relationship I have had was with my NHS audiologist, she was advised I had gone from deaf to deafblind, that I had Usher Syndrome, it made zero difference to how she treated me, for instance she would use gestures I couldn't see when communicating with me, take me into bright rooms that blinded me further. These actions and behaviours would have been perfect whilst I was just deaf but communicating with me as a deafblind person should have different and my condition as a whole been fully considered. She would write to me with the results of my hearing test in font 10 on white paper with tiny graphs all completely inaccessible.

The receptionists would insist hearing aid batteries be ordered by telephone or in person, I couldn't hear on the phone back then and mobility is never easy when deafblind - none of these requirements considered my situation, but they were the rules! I had to rely on others!

Then for me there was regular appointments with ophthalmologists and again, expert in their field but they would speak to me whilst looking at their computer screen and point to screens of graphs I couldn't hear them or see what they were pointing at, just bright screens that blinded me! Correspondence from them did come in a larger font but again on bright white paper I cannot look at, so again inaccessible!

I don't blame these professionals, I don't expect them to know everything about me but I can tell you these scenarios cause stress and anxiety.

Continuously having to communicate my situation, my condition is exhausting and my communication skills are good, many with my condition struggle with communication, I'm sure for them even more stressful and consider how long these explanations take at each appointment!

Two other unnecessary scenarios that could have been avoided:

The first, I finally got a social worker trained to work with deafblind when I was 18 years old, she spent a huge amount of time getting to know me, understanding my requirements and carrying out a thorough deafblind assessment, pages and pages of information amongst which recommendations for important alterations to my home.

Thankfully my family, with the help of Sense took the matter further and another three years later the alterations were carried out.

The second scenario and one many with my condition will be aware of are the never ending assessments insisted upon my Department of Work and Pensions (DWP) for Disability Living Allowance and more recently Personal Independence Payment (PIP) again carried out by professionals who cannot possibly know about every possible condition and as a result regularly make inappropriate awards.

How much time do all these appointments and assessments take, how much do they cost, how much distress do they cause patients like myself.

How easy would it be to have all my data on a screen, on a memory stick, even on my smartphone for me to share with the parties that need to know all the facts about me.

There wouldn't need to be assessment after assessment by people who really do not know my situation. I wouldn't have the stress and anxiety of continuously explaining myself and taking unnecessary time that could be better utilised.

My experiences make it very obvious there is little communication amongst the various departments and teams which clearly makes life unnecessarily difficult for us all.

Digital data seems so obvious, makes life so much less stressful for the patient and frees up time for the professionals to do what they do best and treat patients.

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person.

My answer would be ‘touch,’ however so many seem uncomfortable with this!

I have noticed here in the UK most people are not as “touchy feely” as those in Europe.

Here a greeting tends to be a fairly stiff and formal handshake which is a nightmare for me as I cannot see a handshake coming, whereas in Europe and further afield a greeting is more of an embrace, a kiss or cheek to cheek which is better from my point of view as I am able to establish eye contact fairly easily.

I think the general feeling here is not wanting to evade somebody’s personal space, however for those of us with sensory impairment being touched/tapped appropriately as a way of getting somebody’s attention is no big deal and usually acceptable.

I was born deaf and now deafblind I can say getting the attention of a deaf person is different to getting the attention of a deafblind person.

Touch has taken on a whole new meaning.

Before I lost my sight I got used to being tapped on the shoulder to get my attention, tapping is acceptable.

I could use my sight to compensate for my deafness, a tap would bring an immediate response in that I would turn and look to where the tap came from. On getting eye contact a conversation could begin, orally or sign language as I could lipread, follow facial gesture and body language.

Reliance on visual clues on a one to one basis is always much easier than a two, three or more way conversation, something to bear in mind.

I am oral, however this would be the same irrespective of method of communication. Whether communicating with speech or sign language most deaf people lipread.

Being deaf means concentrating really hard on all visual clues to aid with listening and communication and is very tiring.

Environment can make a big difference, quiet or noisy, light or dark can effect communication and patience is always appreciated.

If approaching somebody you know to be deaf and who's involved in a visual orientated conversation, the key would be to tap that person on the shoulder and wait until they turn to face you - DO NOT stand too close, or exaggerate your lip movements when you open conversation.

Be happy and willing to repeat yourself if asked to do so, repeat, not shout!

Equally if somebody uses sign language allow that person to tell you how they would like to communicate, just because you might not sign do not think you cannot communicate, there’s always a way be it by gesture and a little guess work or even by writing things down.

NEVER, NEVER, NEVER think deaf, cannot hear so no point trying to converse at all. We all want to be included, isolation is a very lonely place. Think VISUAL,VISUAL, VISUAL.

This is how things worked for me whilst I was deaf.

I enjoyed socialising and rarely felt left out.

In mainstream my friends knew to give me a tap on the shoulder to get my attention and I coped very well.

The time I spent with deaf children I noticed they used touch regularly to get each others attention, they would also flick the light switches on and off which I hated as changing light effects my sight so much and is painful, not to be recommended, tapping far more friendly for all.

For a deafblind person, the approach is different.

A tap is a gentle touch and not as useful for a deafblind or blind person.

I benefit more from a hand gently placed on my arm or shoulder, this enables me to turn towards the hand touching me and scan from where the hand is upwards toward the face of the person wanting to converse with me.

Once I’m looking towards the face then speak clearly. This is really helpful.

As someone who has both deafness and blindness the sense of touch has become so important as has the sense of smell in my daily coping strategies.

Both senses enable familiarisation, familiarisation of places, of people and of things.

Touch is another way the deafblind communicate, hand on hand or tactile signing, braille.

I’ve often wondered is the thought of simply touching somebody offputting, if it is please reconsider, I would far rather somebody touched me to get my attention than ignored me.

I always want to feel included, I want people to want to talk to me, to feel comfortable in my company.

Towards the end of last year I started communicating with Dan via Twitter. Dan was working with Radio 4's In Touch and was keen to get me on radio to talk about Usher Syndrome.

As Christmas got nearer we decided to look at doing something in the new year.

One of the programme producers was in touch by email and we discussed my needs and what I would speak about.

The date was set for Tuesday 20 January 2015.

The Radio 4 Studios are in central London, somewhere quite unfamiliar to me, it's busy and worse it was going to get dark! Fortunately my best friend Kyra knows me well and is brilliant at stepping in to help when I need her.

For me planning ahead is very important, however there are some things I cannot plan and that does make me anxious. I was concerned I would struggle to hear well enough to come across well.

Would the studio be dark, would there be bright lights shining at me, would the studio echo, would Peter White be too far from me for me to at least lipread a little, would I mishear - everyday concerns but when appearing live I was worried!

This is Usher Syndrome and I'm used to it but when I'm given the chance to raise awareness with a huge audience I want to get it right.

I should mention I did not have my new Resound Linx2 smart hearing aids back then. They have certainly made a huge difference to my ability to access sound in the more difficult and challenging situations as described above.

Thankfully I was very well looked after by the staff at Radio 4, I got to meet the inspirational Peter White and Dan, who deserves a huge thank you - THANK YOU DAN.

This blog isn't really about me but about "Accessible Social Media" and how powerful and in this case, positive and for me, quite magical.

Without it I would not have appeared on Radio 4 without it I would not have found Dan and without my radio interview about Usher Syndrome and its many daily challenges I would not have reached an audience of millions including the man that is Andy Gill.

Andy not only found Molly Watt Trust on Twitter but has kept in touch and supported the charity since then promising to run The Great Northern Run for us and even though he is a very busy man, he is doing it exactly that.

I have to admit when I read his bio (below) I felt very humbled and a deep pride that this wonderful man, a complete stranger not only listened and took on board what I had said but has been inspired enough to want to help raise awareness and fundraise for the Usher Community - thank you Andy, I hope to be able to come meet you and cheer you on in September.

Andy Gill's Full Bio

On Tuesday 20th January I was driving to Swindon from Alnwick in Northumberland and if I’m not listening to some music I would stick Radio 4 on. Not that I’m an oldie or boring but they do actually have some good material on there that can take you through 200 miles without you realising.

Now on this particular evening I listened to an article on “Usher Syndrome”….. Obviously at first glance you’re thinking the same as me, it’s for those people who don’t like Usher’s music but that wasn’t the case. I am not going to go into detail as it would be worthwhile visiting http://molly-watt-trust.org/ to gain a more thorough understanding for yourself.

I was touched by the content, by the delivery, the honesty, openness, and felt that I had just been educated on the issues people with “Usher Syndrome” can encounter. Bullying, coping with people’s naivety to what other normal looking people can suffer from, lack of support from multiple education factions, and more.

Molly Watt took me on a journey that evening that truly pulled at my heart strings.

I for one didn’t appreciate that this is a progressive condition, however, it doesn’t take a genius to realise that without the correct support network of family, friends, organisations and people like me who stumble across the Radio 4 programme that evening, that people living with Usher Syndrome are living a tough and challenging life.

If I can do anything that makes the slightest bit of difference to Molly, along with other people who have this condition, then I will certainly try my hardest.

On the 13th September 2015, I will be running the Great North Run. Now on my previous 2 attempts I was thwarted in my efforts to break the 2hour barrier by changing my running pattern accommodate 1) a friend who wanted me to wait while he had a pee that appeared to take 20 mins…. 2) to run with my lovely cousin who I must say did absolutely great and I thoroughly enjoyed it even though I shortened my stride and I probably ran the equivalent in steps of 20 miles. Anyway, 2 great runs and both of them were for Children With Cancer or CWC @CWC (Twitter).

Last year I had a ballot place which I deferred to this year as I had work commitments that meant I couldn’t make it. So, rather than run for a recognised national/global charity I asked Molly if it would be possible to represent The Molly Watt Trust and I was delighted to say Molly kindly accepted and has designed and made up a cracking running top which I will wear with pride. I probably won’t achieve sub 2 hours but a lack of true training, new born baby, lack of sleep, I love my food too have all contributed to me remaining “HEAVY”….. I will however enjoy the day knowing that this little run, yes 13 miles, may have generated some additional funding for The Molly Watt Trust and in turn people who have Usher Syndrome may benefit in some way.

Now, if you’re reading this you may want to support me and make a donation or even set me a challenge by stating you will give more if I achieve say sub 2hr 20min for example. Be realistic!

Whatever happens on that day, however much I can help raise towards MWT I will continue to look for ways to support Molly and her trust.

What I will also say is you don’t have to have met Molly to support her. I haven’t but I feel there is a need to raise awareness of Usher Syndrome and the issues these normal looking folk encounter on a daily basis that we all take for granted.

Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear.

It did make communication an issue sometimes, group settings, noisy environments and bad acoustics did make life more difficult, using a phone could also be testing with my early hearing aids too and unfamiliar voices and accents could be testing but I could usually after a little practice get used to them.

Of course there would have been a few things I couldn't do but in the main I felt capable of most things.

To my surprise my disability was more of an issue to the outside world than to me.

This very strange assumption that firstly I would use sign language to communicate was the first barrier I came up against followed by the assumption I would use Braille!

I remember being very shocked at the thought as I had not met a first language signer until I was 14 years old and all I knew about Braille was learning about Louis Braille in Year 2 at Primary School!

I learnt to speak just like my older sibling accept I was slower and I needed specialist speech therapy and I learnt to read books in Primary School as I could see perfectly back then.

BSL is a beautifully visual language and I did learn it just to communicate with other deaf people who use it, I'm not the best at it but I do my best as communication and inclusion is so important to us all.

I really struggle with sign language now my sight is so poor but if it is somebody's only way of communicating I can interpret if the environment is right, this means good lighting, not bright lighting and for the person signing to be at a distance that suits my small window of vision.

The level of concentration for me to interpret is huge as I have to be very alert to scan, process and convert what I'm seeing into speech, that said I'm happy to do it if I can to help.

Being able to communicate with speech is a huge asset to me, particularly since I became deafblind.

Life is challenging but I am able to communicate with the larger society, it is larger society who need to realise not all deafblind or deaf people communicate with sign language and not all deafblind or blind people use Braille.

Also not all blind and deafblind people use voiceover!

I realise going from deaf to deafblind reduces my options, causes confusion and is very misunderstood. However, I like to be the person who decides what I can and cannot do.

Assumption and patronising is very annoying and often damaging, those of us with disabilities that are able to communicate tend to be the experts on us, respect us enough to listen.

Communication is a two way thing and if those who should listen don't then we have a problem!

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I was prompted to write a blog on reading this quote:
“For people without disabilities,technology makes life easier. For people with disabilities technology makes things possible” (IBM training manual 1991).
That quote...